In search of care strategies for distressed people with communication difficulties and a learning disability in palliative care settings: the lived experiences of registered learning disability nurses and palliative care professionals

Abstract

Aims

The aim of this study was to gain an in-depth phenomenological understanding of the care strategies used by registered learning disability nurses (RNLDs) and palliative care professionals (PCPs) to identify and respond to the distress of people with communication difficulties and a learning disability (PCDLD) in palliative care settings. The objective was to critically explore the lived experiences of RNLDs and PCPs who care for distressed PCDLD in palliative care settings.

Methods

A single-phase hermeneutic phenomenological study following Van Manen provided the framework for the synthesis and structuring of the hermeneutic phenomenological text. Participants were drawn from learning disability nursing homes, community learning disabilities teams and hospices. Purposive sampling was used, and 13 participants comprising eight RNLDs and five PCPs were interviewed. Data were collected by semi-structured, audio-recorded interviews, field notes and a demographic questionnaire. Hermeneutic data analysis was used. Ethical approval was gained from the University Research Ethics Panel and from individual research locations.

Results

The primary strategies used by the participants to identify and respond to the distress of PCDLD were encapsulated by seven main themes: knowing by building relationships; positivity in successful caring outcomes; humane care; moral duty of care; time to care; comfortable care environment; and future perspectives.

Conclusions

Effective care strategies based on the above-mentioned findings can reduce the dilemma professionals encounter in addressing the distress of PCDLD and enhance their confidence to care.

Keywords

communication distress hermeneutic phenomenology learning disabilities palliative care Van Manen

Background

Using the findings of a research study, this paper will illustrate the care strategies used by registered learning disability nurses (RNLDs) and palliative care professionals (PCPs) to identify and respond to the distress of people with communication difficulties and a learning disability (PCDLD) within palliative care settings. In the UK, the term ‘learning disability’ is synonymous with ‘intellectual disability’.

My (SA, the primary researcher) interest in caring for distressed PCDLD in palliative care settings was developed from working with adults with learning disabilities with complex health needs and life-limiting conditions (LLCs), and the realisation that providing optimum palliative care to distressed PCDLD was inadequately addressed. This inadequacy was sometimes exacerbated when these individuals were unable to communicate their distress in a way that carers and staff could interpret. This had an impact on the care provided and accessibility to appropriate services, including palliative care.

A personal experience of caring for a man with bowel cancer and pneumonia who died suddenly, and the difficulties encountered by the learning disability nurses and PCPs involved in his care in understanding and addressing his distress, emphasised this inadequacy. This personal experience of providing care, alongside a critical review of existing literature, revealed a scarcity of applicable and dependable research that could contribute knowledge to the care strategies used by RNLDs and PCPs to identify and respond to the distress of PCDLD in palliative care settings.

Introduction

As with the general population, people with learning disabilities (PLD) experience a range of LLCs and need palliative care (Evans et al., 2012). For RNLDs and PCPs, being able to provide palliative care to distressed PCDLD, especially when these individuals are faced with LLCs and death, can be problematic and requires certain proficiencies: first, the proficiencies needed in order to identify and alleviate distressing symptoms; second, an understanding of distress, given that distress is a complex construct (Regnard et al., 2007).

In terms of proficiencies needed to alleviate distressing symptoms, these can be problematic for RNLDs and PCPs owing to the different categories of learning disabilities that affect a person’s cognitive, psycho-social and communication abilities, and thus affect how they communicate distress (Brown et al., 2005; Evans et al., 2012; Regnard et al., 2007). In the UK, learning disability encapsulates significant limitation in intellectual functioning, with an intelligence quotient that is below 70 and significant limitations in adaptive behaviour as portrayed in conceptual, practical and social skills, which begins before the age of 18 years (Schalock et al., 2010). It affects about 2.5% of the population in the UK, with numbers likely to increase every year (Emerson and Hatton, 2008; Emerson et al., 2012). In England, it is estimated that 1,087,100 people are living with learning disabilities (Hatton et al., 2016). There are four categories of learning disabilities: mild, moderate, severe and profound (Department of Health (DoH), 2001).

A person with a mild learning disability has an IQ score that ranges from 50 to 70. The individual is often able to attain basic educational skills. Many are quite self-reliant in meeting their activities of living such as personal self-help skills. In some cases, the person can live independently with support from a carer or a family (DoH, 2001).

A person with a moderate learning disability has an IQ score that ranges from 35 to 50. A person with a severe learning disability has an IQ score of about 20–34. The person may have very basic care skills and may have difficulty in learning new skills. They may require help with everyday activities and be lacking in social skills such as holding a conversation, and many have difficulty in understanding new or complex information. Some may have minimum speech or may not speak at all (DoH, 2001). An individual with a profound learning disability has an IQ score of less than 20. They may have great difficulty communicating and rely on facial expressions, body language and behaviour to communicate. Some may use a small range of formal communication such as symbols, speech and signs (DoH, 2001).

In terms of the complexity of the concept of distress, the predominant challenges that professionals encounter as reflected in the literature are associated with defining and differentiating the physiological, psycho-social and spiritual components inherent in distress (Abeloff, 2004; Ridner, 2004). Furthermore, it is clear within the literature that distress does not have a common meaning among carers; it is not only related to pain and is rarely portrayed from a holistic perspective (Regnard et al., 2007). Distress is often presented from a physiological perspective, with most papers focusing on the experience of pain (Donovan, 2002; Foley and McCutcheon, 2004; Hunt et al., 2003; Manfredi et al., 2003). Papers reflecting psychological perspectives relate to emotional issues and grief (Ryan et al., 2005; Summers and Witts, 2003). Other literature on distress tends to focus on communication difficulties (Black and Hyde, 2004; Cartlidge and Read, 2010; Todd, 2005; Tuffrey-Wijne and McEndhill, 2008).

Additionally, healthcare professionals often assume that assessing or detecting pain by observing behaviour or using self-report measures can provide accurate measures of distress or pain (Foley and McCutcheon, 2004). However, evidence suggests that these assessments are insufficient to address the needs of PLD, especially when they are unable to verbally communicate their discomfort and when healthcare professionals lack the necessary communication and care skills (Foley and McCutcheon, 2004). Therefore, when accepting the complex nature of distress and the complexity of the care of this population, it becomes clear that distressed PCDLD in palliative care settings should be cared for by RNLDs and PCPs who are familiar with or have progressively developed a holistic understanding of this diverse population. This is important because intended care interventions and strategies are based on procedures for consent to treatment, which necessitates providing individuals with relevant information utilising appropriate communication methods and support (General Medical Council, 2008). However, there is a paucity of literature specifically focused on the care strategies used by RNLDs and PCPs in identifying and responding to the distress of PCDLD within palliative care settings. To address this gap, this study set out to develop a better understanding of the issues by delving into the experiences of RNLDs and PCPs who routinely care for these individuals.

The underpinning research question was: What is the experience of caring for a distressed individual with communication difficulties and learning disability in a palliative care setting?

Methods

The aim of the study was to gain an in-depth phenomenological understanding of the care strategies used by RNLDs and PCPs to identify and respond to the distress of PCDLD in palliative care settings. The approach was to critically explore the lived experiences of RNLDs and PCPs who care for distressed PCDLD in palliative care settings. A single-phase hermeneutic phenomenological study following Van Manen (1990) provided the framework for the synthesis and structuring of the hermeneutic phenomenological text

The population consisted of RNLDs and PCPs who had cared or were still caring for PCDLD experiencing distress in palliative care settings. Within the context of this study, PCPs encompassed clinical nurse specialists, a palliative care nurse (PCN) and a palliative care social worker. RNLDs included community learning disability matrons, nursing home managers, staff nurses, and learning disability nurses with specialist training in older adults with dementia and epilepsy and in health facilitation (Table 1).

Table 1.

Demographical characteristics of the participants.

Gender	Role	Professional experience (years)	Experience in current role (years)	Relevant specialist training and education	Age range (years)
Female	RNLD (CM)	28	1.67	LD health facilitation	50–55
Female	RNLD (CM)	14	2	BSc Health Studies	38–43
Female	RNLD (Lead Nurse, practice development and health facilitation)	14	3	PLD, older adults and dementia	50–55
Female	RNLD (CM)	19	1.75	BSc Combined Health Studies	30–43
Female	Senior PCSW	20	15	PCSW	50–55
Female	PCN (nurse in charge of palliative care support and therapy)	1.5	1.5	PCN, support and therapy	44–49
Female	CNS	6	1	CNS	50–55
Male	CNS	15	15	Palliative care	44–49
Female	CNS	8	8	BSc	50–55
Female	RNLD in CTLD	9	7	BSc	38–43
Female	RNLD	5	5	MSc (LD QoL), RGN and Diploma in Epilepsy	38–43
Female	RNLD (nursing home manager)	21	8	MSc (LD QoL) and Diploma in Epilepsy.	44–49
Male	RNLD (nursing home manager)	19	3	RNLD	38–43

CM: community matron; CNS: clinical nurse specialist; CTLD: community team learning disabilities; QoL: learning disability quality of life, PCN: palliative care nurse; PCSW: palliative care social worker; PLD: people with learning disabilities; RGN: registered general nurse; RNLD: registered nurse learning disabilities.

The settings encompassed learning disability nursing homes, hospices and community learning disability teams in the north of England. Within the context of the study, palliative care settings were defined as any setting where individuals are receiving any form of supportive or specialist palliative care treatment. This included not only hospices and intensive care units, but also community-based nursing homes, private homes, day services, as well as respite, residential or supported-living settings where there are nurses and other professionals in attendance to meet a person’s holistic needs.

Participants were purposefully selected based on their position and experience to capture a diverse representation of age, gender, and experience of RNLDs and PCPs in palliative care settings. Participants were included in the study if they were RNLDs or PCPs, had experience of or were working with distressed PCDLD in palliative care settings, were willing to articulate their experiences and were over the age of 18 years. Participants who did not meet these criteria were excluded.

To recruit participants, initial approaches were made to managers or gatekeepers to clarify that the research numbers would be available. Following approval from the university-based School Research Ethics Panel and permission from the unit managers of the organisations where interested participants worked, formal letters of invitation to take part in the study were sent to RNLDs and PCPs who had expressed an interest in taking part in the study.

An informed consent form and an information sheet detailing the nature and purpose of the study were also enclosed. The information sheet clearly stated that participation in the study would depend on meeting the inclusion criteria and giving informed consent by signing the written consent form. Participants were not compelled to sign and were free to withdraw from the study at any time by contacting the researcher. Interested participants were contacted by phone or email to set a date, time and place for a meeting, during which participants could ask for any clarifications regarding the purpose of the study. Then a date, time and agreed convenient place was set for the interviews.

Data collection methods and procedures

In a short piloting phase, initial semi-structured questions were piloted with some RNLDs and PCPs who had no intention of participating in the study. The pilot was significant and successful because it allowed for the suitability of the questions to be tested and for the questions to be refined before the commencement of the actual data collection.

Data were collected by in-depth, semi-structured, face-to-face, audio-recorded interviews, field notes and a demographic questionnaire. The period of data collection was 2011–2014.

The interviews followed a phenomenological approach by being purposefully directed to participants’ lived experiences encapsulating their beliefs, feelings and convictions about the phenomenon of caring for PCDLD within palliative care. Participants were asked about their experiences of caring for PCDLD experiencing distress within palliative care settings. Prompts were used to develop their responses to this central phenomenon in order to gain an understanding of the care strategies they used to identify and respond to the distress of PCDLD within palliative care settings. The time and place for the conduct of the interviews were based on participants’ preferences, which could be a quiet room in their work setting or one on the university campus. The interviews lasted between 25 and 90 minutes and were flexible; participants were free to stop at any given point if they chose. This allowed participants the time and scope to talk about their opinions and helped to build vital rapport and trust.

The field notes included a combination of raw data from participants’ interviews, personal reflections and detailed descriptions that enhanced the remembrance of events in the setting. These were written during and immediately after each interview session. The interviews were transcribed verbatim as soon as possible after the interview session, and the field notes were added to the transcripts of the interviews.

Analysis

The data analysis for the study was undertaken by the researcher (SA) on paper paper using Microsoft Word in order to maintain hermeneutic closeness with the text. The transcripts were given to participants to check that they accurately reflected their interviews, and the academic supervisors (MK and VF) assured rigour of the data analysis throughout by ensuring that the emergent themes truly reflected the transcripts. Maintaining rigour in the analysis of qualitative research data can be challenging; therefore a research mentor (academic supervisor), especially one with more experience in the specific methods or topics of interest, can be instrumental (Corbin and Strauss, 2015; Marshall and Rossman, 2016).

The hermeneutic data analysis process used in the study was framed by Van Manen’s (1990) precept of hermeneutic data analysis. This process comprises the initial approaches of isolating themes – the ‘wholistic’ approach, the selective or highlighting approach, and the detailed or line-by-line approach – and considers the four lifeworld existential themes – corporeality, relationality, temporality and spatiality – and six research activities that underscore the need to ensure a balanced research by taking into consideration the totality of the text. Key to a phenomenological study is the need to identify an essence statement that represents the main themes and provides a symbolic response to the research question. Following the verbatim transcription of participants’ transcripts, subthemes were identified using the wholistic approach, selective or highlighting approach, and the detailed or line-by-line approach. A total of 19 subthemes were clustered into seven main themes to determine the essence statement (Table 2). Each of the seven main themes is presented in more detail with supporting quotes in the results section. The seven main themes were then mapped onto Van Manen's overarching four lifeworld existential themes (Table 3) to establish their wider significance as essential structures of the participants' lived experiences. The data were then examined to arrive at the essence statement. These are presented below.

Table 2.

Clustering subthemes into main themes.

Table 3.

Main themes mapped onto overarching lifeworld existential themes.

Main themes	Overarching themes (Van Manen’s (1990) four lifeworld existential themes)
1. Knowing by building relationships	Relationality
2. Positivity in successful caring outcomes	Corporeality
3. Humane care
4. Moral duty of care
5. Time to care	Temporality
6. Comfortable care environment	Spatiality
7. Future perspectives	Extended dimension of temporality

Results

Altogether, 13 interviews were conducted, lasting from 25 to 90 minutes. Pseudonyms have been used to maintain participants’ anonymity. It is important to note that although there was commonality in the approaches used by both professional groups (RNLDs and PCPs), a major difference was identified around professional expertise and experience, which accounted for the confidence or lack of confidence in providing care to this population. Edith, a clinical nurse specialist, explained that:

What I lacked in skills about learning disabilities they (the RNLDS) were able to sort of advise me and we worked together really well. (Edith, Ln. 67–69, clinical nurse specialist (CNS))

Jane stated:

Learning disabilities and palliative care we share some similar person-centred care approaches but have different skills … (Jane, Ln. 50–52, RNLD)

The seven main themes identified were as follows.

Theme 1: Knowing by building relationships

Participants explained that knowing by building relationships was an approach used to care for PCDLD who are distressed within palliative care. Knowledge to care was developed by building relationships at three levels: with the PCDLD, with their families and carers, and among the professionals themselves.

The profundity of the relationships developed with PCDLD enhanced the development of a pattern of verbal or non-verbal communication, which was fundamental in anticipating their distress and facilitated the response to their distress with the provision of optimum care. Sue, a CNS, confirmed the importance of knowing by building relationships:

Right, getting to know him … he had a standard phrase … and I think we soon learnt that the more he said that it indicated his level of distress. (Sue, Ln. 43–49, CNS)

The professional relationships with family members and carers allowed for the attainment of foundational and historical knowledge required to understand distressed PCDLD, as Jane explained:

They had worked with him for about 5 years so they were a great source of err valid information. (Jane, Ln. 128–139, RNLD)

Gary talked of the significance of knowing the family and the deficits of relying on written documentation:

You get to know the families well and they will share information with you from that client’s childhood and it can be very significant and you don’t always have that information in terms of written documentation. (Gary, Ln. 497–509, RNLD)

Collaborative working, honest, mutual professional relationships, and support for each other were aspects of knowing by building relationships that ensured quality care for the PCDLD in palliative care settings, as Edith said:

working collaboratively with different professionals … I think it benefits the patients and their journey using if you like, a multi-disciplinary approach. (Edith, Ln. 126–132, CNS)

Theme 2: Positivity in successful caring outcomes

The participants described positivity in successful caring outcomes as another strategy to care for distressed PCDLD within palliative care settings. The participants explained that this encompassed being conscientiously reflective in terms of drawing from positive and successful past professional and personal experiences of caring for this population, to plan current and future care.

Paula, a PCN, explained how reflecting on and utilising skills from positive and successful past professional and personal experiences of caring for this population can enhance the provision of appropriate confident care:

I have personal experience with learning difficulties. My sister’s son has autism err, and sometimes she can be very protective. I understand though … It is that understanding of your own self as a person and a personal experience that sometimes gives you confidence to care. (Field notes, 6/12/11: Paula, PCN)

Ultimately, such thorough reflection in terms of utilising skills from past positive experiences of care allows for confident care to alleviate the distress of PCDLD, and creates a sense of pride and job satisfaction. Lynn said:

It was how his family wanted it to be … we were satisfied that we were able to meet his need as he wanted and the family were happy and he had a dignified death. (Lynn, Ln. 242–254, RNLD)

Theme 3: Humane care

Participants considered humane care as another approach to caring for distressed PCDLD in a palliative care setting. Humane care as described by the participants included making a deliberate effort to ensure that sincerity and sensitivity, positive regard of the whole person, empathy and the use of therapeutic touch were the embodiment of the care provided to distressed PCDLD. Participants explained that humane care allowed them to be sensitive, to be physically and authentically present in the world of the distressed individuals, and to alleviate their distress.

Lyn talked of the importance of seeing the whole person:

At the end of the day it is about the whole person really, and us trying to relieve his pain and also consider the suffering of those who love him … (Lyn, Ln. 242–258, RNLD)

Jade explained that touch could be an authentic means of being present and relieving distress:

… he was very restless and he was groaning a lot … that sort of indicated to us that he wasn’t really settled … But once the dose of pain relief had been increased, then he did seem to calm quite significantly. A comfort touch of hands also works. (Jade, Ln. 134–140, RNLD)

Tracy reiterated:

it’s just about touching, just a gentle touch relieves distress and communicates a thousand words, it really does, and it’s so important for people with learning disabilities to help them experience … a good death. (Tracy, Ln. 404–413, RNLD)

Theme 4: Moral duty of care

Moral duty of care was described by participants as another strategy employed to care for distressed PCDLD in palliative care settings. Participants’ explanations portrayed moral duty of care as having two components: first, an obligation in maintaining moral standards of care by acknowledging any personal shortcomings related to the care of distressed PCDLD; and second, training to overcome these shortcomings and utilising their newly enhanced specialism to provide the best possible care, including alleviating distress throughout the individual’s disease trajectory.

Moira declared:

Whatever shortcomings that I had … you know … I had faith in myself to be able to overcome those shortcomings. (Moira, Ln. 154–156, RNLD)

Gary explained how training had helped shift the focus of their service and highlight the importance of dignity:

I think GSF (Gold Standard Framework) training has changed us as a service … obviously, our main focus is about people having quality of life, but you know … death is part of life and equally they should have quality at the end of life just as well as during their life. And more so in terms of our moral role to provide a dignified end at such time … (Gary, Ln. 375–388, RNLD)

Theme 5: Time to care

For the participants, time to care was fundamental to the care of distressed PCDLD within palliative care settings. Participants described this as effective time management, which must take into consideration anxiety, caring opportunities and dying as part of living. Participants explained that time was limited and yet a priority for these individuals and their families. Therefore participants had to be mindful to provide optimum care, while having to work within the constraints of available time and certain human limitations. Human limitations in this case included healthcare bureaucracy and the anxiety of delivering care without professional expertise or outside familiar care settings, as well as the dilemmas of where they fit in the bigger picture of palliative care and learning disability services.

To emphasise the significance of effective time management, Lyn talked of the frustrations of dealing with bureaucratic delays:

… this young man, he was actually in transition, and he was just coming from … children’s services into adult services … and there wasn’t an automatic referral into the adult palliative care team … I just felt frustrated that it did seem to sort of delay things a little bit and putting barriers that maybe shouldn’t have been there … (Lyn, Ln. 178–198, RNLD)

Tracy reiterated:

I think … for learning disabilities, it’s important to get involved early … I do know that the End-of-Life project states that preparation and good planning for end-of-life care is probably twelve months … (Tracy, Ln. 387–397, RNLD)

Theme 6: Comfortable care environment

Purposely ensuring a comfortable care environment was deemed another strategy to care for distressed PCDLD within palliative care settings. Participants’ narratives indicated that a ‘comfortable care environment’ encompassed aesthetic knowing, which meant that to identify and alleviate any cultural distress related issues, participants knowingly adjusted the available care environment to plan care that was sensitive to the spiritual, cultural and religious inclinations of the distressed and dying person. Gary explained:

She didn’t want to be in a hospice, she wanted to be in familiar surroundings … for the last two weeks of her life she was bed-bound so she remained in her bedroom … which made things easier so family could have private time with her. She was religious so she was able to have a priest visiting … He read the sacraments of the sick in like a private dignified setting and then at the end he read the last rites to her … At the end of the day it was the whole person not only their pain or distress that we were thinking about. (Gary, Ln. 211–231, RNLD)

Theme 7: Future perspectives

Participants explained that taking future perspectives into consideration was fundamental to the care of distressed PCDLD in palliative care settings. Participants explained that this comprised being proactive in anticipating potential drawbacks to learning disability and palliative care service provision in order to ensure future quality care for distressed PCDLD in palliative care settings. Participants highlighted that present and future hindrances to care such as poor funding, lack of autonomy and poor access must be proactively identified and addressed. Laura talked of the issue related to funding and explained:

I think one of the things that … we in the learning disabilities and palliative care group would like to see is that maybe … we need to be quicker at getting that kind of funding whether that’s ILF or direct payments for continuing health care into those nursing homes … . (Laura, Ln. 514–525, PCSW)

Linking the main themes to the overarching lifeworld existential themes

The seven main themes were mapped onto Van Manen's overarching four lifeworld existential themes (Table 3). This was to emphasise how these themes main resonated with the existential themes, and their wider significance as crucial constructions of the participants’ lived experiences of caring for this population. Brief explanations are provided, followed by the essence statement.

Relationality resonated through the finding ‘knowing by building relationships’, as it reflected how the participants sustained relationships with others, including PCDLD, their family members and the participants themselves.

Corporeality was evident within three themes: ‘positivity in successful caring outcomes’, ‘humane care’ and ‘moral duty of care’, as these themes incorporated participants’ awareness of the need to be authentically present in order to be able to provide palliative care that encompassed sincerity and sensitivity.

Temporality encapsulates our temporal way of being in the world (Van Manen, 1990). Temporality echoed through the themes ‘time to care’ and ‘future perspectives’ as participants made a deliberate effort to be aware of time in order that timely and appropriate care was provided to address the distress of PCDLD.

Spatiality relates to ‘lived space’ (Van Manen, 1990). Spatiality resonated through the theme of ‘comfortable care environment’, which encompassed the participants’ discussion on planning care that was sensitive to the spiritual, cultural and religious needs of the distressed and dying PCDLD within the limitations of the actual care environments.

The essence statement

The goal of the continual examination of the text was to construct a statement that portrayed the fundamental nature of participants’ experience of caring for distressed PCDLD.

The essence statement arrived at showed the care strategies used by registered learning disability nurses (RNLDs) and palliative care professionals (PCPs) focused on ensuring “Optimism and commitment in building personal and professional relationships, and utilising specialist and physical skills to provide timely optimum humane care to distressed people with communication difficulties and a learning disability within comfortable palliative care settings.”

The essence statement was representative of the seven main themes that resonated with Van Manen’s lifeworld existential themes, and was symbolic of a response to the research question. The essence statement was indicative of the process of caring for distressed PCDLD in palliative care settings as experienced by the participants, and had implications for a proposed theoretical model of caring for this population. This will be discussed in a subsequent paper.

Discussion

Caring for distressed PCDLD receiving palliative care is complex and challenging. The findings of the exemplar study are unique, but to some extent resonate with existing literature. The finding ‘Knowing by building relationships’ addressed the issue of communication from a holistic perspective. This theme emphasised that comprehensive knowledge is required to care for distressed PCDLD within palliative care settings, and that it can only be achieved realistically by building relationships with the PCDLD, with family members and among professionals. Such knowledge would ensure appropriate communication and empower participants with the ability to anticipate and address individuals’ distress. This view to an extent echoed the significance of communication identified by Read (2005) and Tuffrey-Wijne and McEndhill (2008). Read (2005) emphasised the ability of communication to enable quality palliative care for PLD. Concurrently, Tuffrey-Winje and McEndhill (2008) established that communication problems in palliative care result from the failure of professionals to communicate accurately in order to be understood by their clients, and from the reluctance of carers to disclose the truth for fear of upsetting the client due to concern that the client may be unable to cope with information about their condition.

Purposefully addressing the distress of PCDLD through a humane and positive regard for the whole person was seen by the participants to be fundamental to ensuring confident and high-quality care. To an extent, this concurred with Black and Hyde’s (2004) findings that relate to assuring confident care. Black and Hyde noted that person-centred care protocols that accommodate people with profound learning disabilities, effective discussions and ongoing clinical support among the multidisciplinary teams help to reduce the fear experienced by nurses and healthcare professionals in caring for PLD. Despite Black and Hyde’s (2004) contribution about the factors that can support the confident care of PLD, the focus of their work was cancer care, whereas this study considered the wider context of LLCs and associative distress.

The concept of adjusting the care environment to reduce the distress of PCDLD by ensuring that it was as supportive and culturally and aesthetically appropriate as possible was central to the findings of this study. Participants emphasised the importance of identifying and responding appropriately to any emotional, spiritual or psycho-social distress experienced by PCDLD, and of ensuring that care was planned as optimally as possible within the constraints of the care environment. Personalising care helped professionals to meet the spiritual, cultural and religious needs of the PCDLD, and to maximise their rights, their autonomy and their choices such as where they wanted to be cared for. This is contrary to Tuffrey-Wijne’s (1998) findings, which demonstrated that many PLD are denied the chance of dying in their own homes. The cultural relevance of care is also seen to be important in Flower’s (2004) work: she argues that of the many variables known to affect health beliefs and practices, culture is one of the most influential.

Time was identified as a key issue for delivering optimum care, not just in terms of the care that needs to be delivered now and in the short-term future, but also when considering longer-term care needs and issues such as transition, and better access to a more accessible, consistent and integrated model of palliative care across children’s specialist palliative care, adult and community palliative care services. These findings align with existing literature that argues that more seamless, flexible and accessible services are needed (Addicott and Ashton, 2010) and that end-of-life care should feature in other care pathways, not just cancer. The participants in this study identified the benefits of training and education; this echoes the work by Evans et al. (2012), who recommend that in order to improve inequality in cancer care, healthcare staff must attend awareness sessions about making practical adjustments for PLD when they are hospitalised.

A limitation of the study was the small sample size, which meant that generalisation was not possible, although generalisation is rarely a consideration of a phenomenological study. After completing 13 interviews and undertaking analysis, we considered that saturation had been achieved as no new themes could be identified, and believed that a continuation of the interviewing process would have been redundant (Bowen, 2008; Mason, 2010).

This study highlighted the need for training and recognised that positive caring outcomes and experiences were sources of knowledge, which served as a precedent to plan future care. The implications for nursing research and nurse education are the need for longitudinal studies on RNLDs’ and PCPs’ lived experiences of caring for PCDLD within palliative care, and the need to embed such lived experience concepts within the nursing curriculum. This will enhance learning for pre-registration students and continuing professional development of social and healthcare professionals. This is especially important because nursing practice placements in real-life palliative and end-of-life situations are difficult to orchestrate for students.

Conclusion

Identifying and addressing the distress of PCDLD within palliative care can be a complex issue. In an attempt to describe more adequately how to care for PCDLD experiencing distress within palliative care, reduce the dilemmas professionals encounter in addressing the distress of PCDLD within palliative care and enhance their confidence to care, an essence statement was developed within a hermeneutic framework. The statement emphasises the importance of optimism and commitment in building personal and professional relationships used in conjunction with their specialist and physical skills to ensure timely optimum humane care is given to distressed people with communication difficulties and a learning disability within comfortable palliative care settings.

Key points for policy, practice and/or research

The study identified relevant and effective care strategies that can reduce the dilemma RNLDs and PCPs encounter in addressing the distress of PCDLD and enhance their confidence to care.

Good practice in the provision of palliative and EoLC to this population may potentially influence planned changes in care strategies and policies.

Embedding these lived-experience concepts within nursing curriculum will enhance learning for pre-registration nursing students and continuing professional development of social and healthcare professionals.

In the theme ‘Future perspectives’, the participants described the need for a more integrated palliative care service. This concurred with existing policy and Department of Health (DoH, 2012, 2015) initiatives to ensure an integrated and whole system approach in palliative care services to promote equality of access by all in need of treatment and possibly influence the development of learning disabilities specific government policies and initiatives.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Ethics

The research project was sponsored by the University of Huddersfield as a fee waiver scholarship. The research adhered to the stipulations of the University's School Research Ethics Panel. It was conducted from October 2010 (start date of PhD programme) to May 2015 (End date of PhD).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research project was conducted from October 2010 (starting date of PhD programme) to May 2015 (Ending date of PhD) and was sponsored by the University of Huddersfield as a fee waiver scholarship. The research adhered to strict ethical guidelines as stipulated by the University of Huddersfield's School Research Ethics Panel.

Sally K Arrey (PhD, MSc, PGDipHE, BA(Hons)Lit, RNLD) is a Lecturer in Nurse Education in the Faculty of Health and Social Care at Edge Hill University.

Marilynne N Kirshbaum (RGN, PhD, FHEA) is a Professor of Nursing and Nursing Theme Lead in the School of Health/Faculty of Engineering, Health, Science & Environment at Charles Darwin University, Australia.

Vincent Finn (PhD, MSc Bio.Med.Sci., BSc(Hons)Nurs., DPSN, RNT, Cert Ed., RPN(Hons), RGN, Pg Cert HE, C.Sci., FIBMS, FHEA) is a Senior Lecturer in the School of Human & Health Sciences, Acute Care Division (Adult Nursing) at the University of Huddersfield.

References

Abeloff MD, Armitage JO, Lichter AS and Niederhuber JE (eds) (2000) Clinical Oncology, 2nd edn. New York: Churchill Livingstone.

Addicott R and Ashton R (eds) (2010) Delivering Better Care at End of Life: The Next Steps. A Report from the Sir Roger Bannister Health Summit, Leeds Castle. London: The King’s Fund.

Black

Hyde

(2004) Caring for people with learning disability, colorectal cancer and stoma. British Journal of Nursing 13(16): 970–975.

Bowen

(2008) Naturalistic inquiry and the saturation concept: A research note. Qualitative Research 8(1): 137–152.

Brown M, MacArthur J and Gibbs S (2005) A New Research Agenda: Improving General Hospital Care for People with Learning Disabilities: The Findings of a Conference and Working Day held at the Chancellor’s Building, The Royal Infirmary of Edinburgh 11th October 2004. ISBN 1-900852 -03-9.

Cartlidge

Read

(2010) Exploring the needs of hospice staff supporting people with an intellectual disability: A UK perspective. International Journal of Palliative Nursing 16(2): 93–98.

Corbin

Strauss

(2015) Basis of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 4th edn. Thousand Oaks, CA: SAGE.

Department of Health (DoH) (2012) End of Life Care Strategy Fourth Annual Report. London: Department of Health.

Department of Health (DoH) (2015) One Chance to Get it Right: One Year On Report. London: Department of Health.

10.

Department of Health (DoH) (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. A White Paper, London: The Stationery Office.

11.

Donovan

(2002) Learning disability nurses’ experiences of being with clients who may be in pain. Journal of Advanced Nursing 38(5): 458–499.

12.

Emerson E and Hatton C (2008) People with Learning Disability in England. Lancaster: Mencap/Learning Disability Coalition, University of Lancaster Centre for Disability Research.

13.

Emerson

Hatton

Robertson

, et al. (2012) People with Learning Disabilities in England 2011, Durham: Improving Health and Lives: Learning Disabilities Observatory.

14.

Evans

Beattie

Sloane

Hurley

(2012) Researching Inequalities in Cancer: Black & Minority Ethnic Communities an People with Disabilities, End of Project Report: People with a Learning Disability. Yorkshire & Humber: Macmillan Cancer Support and Yorkshire Cancer Network.

15.

Flowers

(2004) Culturally competent nursing care: A challenge for the 21st century. Critical Care Nurse 24(4): 48–52.

16.

Foley

McCutcheon

(2004) Detecting pain in people with an intellectual disability. Accident and Emergency Nursing 12: 196–200.

17.

General Medical Council (2008) Consent: Patients and Doctors Making Decisions Together, London: General Medical Council.

18.

Hatton

Glover

Emerson

, et al. (2016) Learning Disability Observatory. People with Learning Disabilities in England 2015: Main Report, London: Public Health England.

19.

Hunt

Mastroyannopoulou

Goldman

, et al. (2003) Not knowing – the problem of pain in children with severe neurological impairment. International Journal of Nursing Studies 40(2): 171–183.

20.

http://www.nova.edu/ssss/QR/QR 10-4/Kruass.pdf .

21.

Manfredi

Breurer

Meier

, et al. (2003) Pain assessment in elderly patients with severe dementia. Journal of Pain and Symptom Management 25: 48–52.

22.

Marshall

Rossman

(2016) Designing Qualitative Research, 6th edn. Los Angeles, CA: SAGE.

23.

Mason M (2010) Sample size and saturation in PhD studies using qualitative interviews. Forum: Qualitative Social Research 11(3): Art. 8.

24.

Read

(2005) Learning disabilities and palliative care: Recognizing pitfalls and exploring potential. International Journal of Palliative Nursing 11(1): 15–21.

25.

Regnard

Reynolds

Watson

, et al. (2007) Understanding distress in people with severe communication difficulties: Developing and assessing the Disability Distress Assessment Tool (DisDat). Journal of Intellectual Disability Research 51(4): 277–292.

26.

Ridner

(2004) Psychological distress: Concept analysis. Journal of Advanced Nursing 45(5): 536–545.

27.

Ryan

Schofield

Cockburn

, et al. (2005) How to recognise and manage psychological distress in cancer patients. European Journal of Cancer Care 14: 7–15.

28.

Schalock

Borthwick-Duffy

Bradley

, et al. (2010) Intellectual Disability: Definition, Classification and Systems of Support, Washington: AAIDD.

29.

Summers

Witts

(2003) Psychological intervention for people with learning disabilities who have experienced bereavement: A case study illustration. British Journal of Learning Disabilities 31(1): 37–41.

30.

Todd

(2005) Surprised endings: The dying of people with learning disabilities in residential services. International Journal of Palliative Nursing 11(2): 80–82.

31.

Tuffrey-Wijne

(1998) Care of the terminally ill. Learning Disability Practice 1(1): 8–11.

32.

Tuffrey-Wijne

McEndhill

(2008) Communication difficulties and intellectual disability in end-of-life care. International Journal of Palliative Nursing 14(4): 189–194.

33.

Van Manen

(1990) Researching Lived Experience: Human Science for an Action Sensitive Pedagogy, Ontario: Althouse Press.